A Delivery Suite Diagnosis of Down syndrome – for Medical Professionals

The way in which a delivery suite diagnosis of Down syndrome is communicated is often done in a dissatisfactory manner.

The firm diagnosis of Down’s syndrome on phenotypic grounds is usually possible immediately after delivery. It is essential to inform the parents, at least of your suspicions, as soon as possible after delivery.

The Delivery Suite diagnosis of Down syndrome should follow this plan:

via Must Be April Photography – Madeline Stuart, international model

1. As soon as the baby is delivered congratulate the parents on the birth of their child.

2. Advise them whether the baby is healthy or not and explain any immediate resuscitative procedures you are performing.

3. As soon as third stage is complete and the baby is stabilised, ensure that you can have some time alone with both parents and the baby. Many parents will already have sensed an apprehensive atmosphere in these few minutes. A midwife who has been involved with the delivery may be an invaluable support.

4. State your clinical diagnosis and, if necessary, your degree of certainty. An opening statement could be: “She looks very healthy but I have some news for you that you might not have been expecting. Your baby has Down’s syndrome.” You should be touching the baby as you say this and using her name, indicating your acceptance of the child. No new parent wants their doctor to treat their baby with repugnance.

5. After dealing with any immediate denial statements from the parents, it is necessary to evaluate their understanding of the diagnosis (“What do you understand by the term Down’s syndrome?”). It may become evident that they have little knowledge about the condition or they are weighed down with myths and misunderstandings. These should be corrected carefully.

6. It is impractical to fully educate the parents of a baby with Down’s syndrome immediately after delivery. Enough information should be given so as to answer their immediate questions and support them until later in the day when more detailed discussions can take place. Immediate information should include a synopsis of the aetiology of the syndrome, a defusing of either parent “blaming” the other, and a description of investigations and procedures which are necessary to fully evaluate the child’s health.

7. A complete discussion of the diagnosis should take place once the parents are at least partially recovered from the immediate stress of delivery, usually within twenty four hours. By this time there will be a barrage of questions which will need to be answered accurately and adequately. Every effort should be made to have both parents at this meeting. Again the child should be present as the focus of the discussions and should be held by the parents. It is still too early to overload the parents with every minute fact so there is a need to be sensitive to their particular rate of uptake of these new and complex concepts.

thatdadblog.com pictured: a little boy with Down syndrome looking at a toy dinosaur

8. Do not try to be to predictive. It is nonsense to try to foresee the future for any child with accuracy. Perpetuating myths such as “at least he’ll always be loving and enjoy music” is inexcusable. A “broad brush” picture should be painted which recognises every child’s capacity to develop individually.

9. Family and friends can be a source of great support but they may also need information and education. The Down’s Syndrome Association offers ongoing support to parents of babies with Down’s syndrome, including support from parent who have had a child with Down’s syndrome.

10. It may be helpful for relations to bring in photos of the parents as neonates. This allows the parents to compare the baby’s facial characteristics with their own and see that it is their baby, not a “Down’s baby”.

11. Most doctors understand the parents’ need to have time alone but also to feel confident in approaching the doctor at any time for more information. An open-door policy is essential. When a case of Down’s syndrome is delivered, a child is born. This simple fact is so often overlooked in the storm of emotional upheaval that the new mother and father are rarely congratulated on becoming parents. One mother was even sent an “In Sympathy” card the day after she delivered a healthy baby who had Down’s syndrome . Less than thirty years ago some Australian doctors used to advise their patients to place their Down’s syndrome babies in institutions and tell their relations they had been stillborn. Although this sort of approach no longer exists, very occasionally the parents of a newborn with Down’s syndrome will decide that, for whatever reason, they are unable to accept the child. In this situation the options include foster care or adoption and it is obviously not a decision to be taken lightly. The doctor’s role is again that of an informed counsellor, not a judge.

Kat Abianac with son Parker

The process of coming to terms with having given birth to a child with Down’s syndrome has been likened to the well-known grief reaction which occurs after the death of a child. Stages such as denial, anger, acceptance, for example, are recognisable and parents are said to be grieving for the loss of their expected “perfect” child. While this view has some small merit, it fails to address the long term and varying nature of the readjustment process in the case of the family of a child with Down’s syndrome. After all, the child has not died.

Want advice on what to say to a new parent, if you’re NOT a medical professional? Click here and read more on my website.

Editor Note: The terms Down’s syndrome and Down syndrome have been used interchangeably in this article. Both are correct in the UK and Australia respectively.

1 comment

PB
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June 8, 2016

My daughter was born 28 years ago in CA. She was born with a very rare form of dwarfism. Many of the same things were said and done by the doctors regarding her condition.
I STRONGLY disagree with #7! They made me hold my daughter while I was surrounded by a room full of doctors, explaining all of the awful things that were bound to occur. I felt like was going to drop my daughter! I couldn’t understand, and still don’t, really why they did that to me! It was just awful. I had my husband wheel me out of there, as fast as he could, with the doctors apologizing, just hovering over me. I thought I would faint right there in the wheelchair!
Please don’t do that to a new mother! Thank you!